r/VestibularMigraines

My husband has Meniere's, vestibular migraines, drop attacks, and regular migraines. I won't go into too much detail, but the last year has been hell for him. His regular migraines were being controlled with Nurtec, but he was having vestibular migraines multiple times a week, sometimes lasting a few days. We tried the low-salt diet, but that didn't help.

I got him in to see a doctor at Hopkins, and while he was talking about the migraine diet, I noticed it's very similar to the low-histamine diet for MCAS. After hours of research, I found an MRT blood test through Oxford that tests for sensitivities. I'll say this up front: I know there is limited data on sensitivity testing, but this one is different from most you buy online.

His test results came back after only 4 days of the blood draw, along with a diet to follow to avoid his trigger foods. He's been following a low-histamine diet for 3 months now, has been taking H1 and H2 blockers, and Quecertin, and has had no vestibular migraines. One of the foods on his "no" list was rice (which I found odd). However, he tested this by having 2 tablespoons of rice, and within 10 minutes, he had a vertigo attack after not having one for 3 months. There are H1, H2, H3, and H4 receptors in the inner ear.

He said he feels the best and most stable he has in years. I also have an appointment scheduled with an MCAS-trained allergist/immunologist to discuss possible MCAS.

I'm writing this to let other people know about a potential diet that could help. The MRT test is expensive, but in my opinion, absolutely worth it. At the very least, a low-histamine diet, Zyrtec, and Pepcid could help.

I always fantasized about coming to Reddit after years and years of searching for an answer to my issues and sharing the story so someone could maybe find it one day and not have to redo the work.

I was dx with vestibular migraine about 13 years ago after a sudden onset of daily attacks that felt like a mixture of seasickness and intoxication. Had a complete neuro and gastro work up which was negative. Saw an advanced eye doc, completely negative. The illness was constant and affected my family, my work, and just about every other part of my life. It was with me at funerals and weddings. At the birth of both my children. It was like an evil little demon with me all the time.

Eventually trialed elavil and that was a game changer. Instead of 6-7 attacks a week, I was having 5-6. Big improvement when you’re miserable. Vestibular rehab therapy, every legacy and modern migraine medication including the new wave expensive stuff, and no noticeable relief. Finally found a rescue med that worked amazingly well, which was compazine particularly in combination with alprazolam and Benadryl. That was my go to for years but obviously not ideal or sustainable. I’ve trialed injections, pills, neuro stimulation, medical marijuana, becoming a borderline alcoholic from self medicating, everything.

That brings me back to April 1st of this year. I had a tooth go bad due to resorption, which I had never even heard of. Dentist extracted the tooth and in passing asked if I was a grinder. I said that I was and I experienced frequent tension headaches. At this point I did not draw any lines between VM and bruxism/TMJ. Dentist suggested an occlusal guard as a potential preventative for more tooth issues due to grinding. I received and started wearing the guard April 20th.

That was exactly one month ago. In a typical month I would take medication roughly 25-27 times. In the past month I have taken medication four times. An almost instant, almost complete, painless, drug free remission. I needed most of those four doses in the very beginning and now I’m two weeks straight with zero medication.

I was floored. Extremely emotional that something so small, simple, and relatively affordable could fix a devastating, decade long disease progression. I couldn’t at first wrap my head around the idea that something as generally benign as grinding my teeth could effectively destroy my quality of life for years.

If you’ve made it this far and any of this sounds familiar, consider seeing a dentist who can make a professional guard for you after confirming TMJ/bruxism. Maybe it helps no one, but if it can prevent one other person suffering so long it’s worth the share.

Obviously one month in is a risky time to declare victory. I’ve spent the month trying to identify any other variables and I can’t think of any off the top of my head. Really hoping it sticks around!

Hi guys! I just discovered this group and it’s been super helpful already. Glad to have found this community.

I got diagnosed with vestibular migraines last summer & they usually happen about once a month or so. I’ve recently started PT for it since I’ve been having more frequent episodes related to motion sickness.

I had an episode last weekend after getting motion sick in the car, which lasted about a day or so.

I have a bachelorette trip this weekend which is about 3 hour drive away. I am super worried about getting motion sick and therefore triggering a VM attack. Does anyone have any tips for before/during the car ride?? I was gonna try and sit in the front for sure and stay off my phone, but unsure of anything else.

Any advice would be appreciated!! I’m super worried but have been looking forward to this trip for a while and want to enjoy it if I can!

(TLDR; tips before a long car ride with VM.)

ETA: has anyone tried neuro stimulation before?? It says it rebalances your nervous system but I don’t want it to trigger me

Thank you!!

Hello all,

I've read about a lot of positive experiences with SSRI's and SNRI's and chronic dizziness. I was diagnosed with vestibular migraines roughly a year ago, and have been experience the textbook symptoms for about 18 months. It never ever goes away, it only varies in intensity. My experience is pretty much 24/7 rocking/swaying like I'm on a boat feeling, with periods of feeling a swirling sensation and more traditional dizziness during more intense bouts. Binocular vision has been a major issue as well.

I've decided it's time to speak to my doctor about SSRI/SNRI treatment, but have some basic concerns about side effects and the difficulty some people have with eventually getting off of them. If anyone has some good questions or tips that I should speak to my doctor about regarding these drugs, I would appreciate the help.

I know there are a lot of good resources here regarding them, and I will continue to investigate. Thanks a lot!

Hi I would like to know how people remain positive, with this horrible condition.

I've been diagnoised for over 4.5 years and find it so debilitating, it's difficult to function.These past 10 days have made me feel so down.

I am OK sort of pottering around my home,but if I have to go anywhere it's no. My Body literally won't let me.In the past 10 days I've managed to get in a taxi and go for a food shop.That's it

I have a fullness in my ear which is uncomfortable,mild headache and feel like I've just got off the waltzers after been on them for a few hours.

How do you cope with this feeling and how long before your able to do stuff.Or am I expecting to much of myself and pushing myself to try to do stuff that I shouldn't be.

Today I've managed to take a shower,do the washing plus hang it on the line. Should I be happy about these little things that before were do able and more.Also got tinnitus feel like I'm on a plane taking off with my ear is so pressured.

I think I just need reassurance, as only you guys know what it's like help me feel better.I miss my old life !

Hi, for those of you who get Botox, I have a question. So I had my third round of Botox about 10 days ago. Normally I have a sore/bruised feeling particularly near my temples for about five days, and then it’s gone and I don’t notice anything. But here I am on day 10 and it still feels really painful—like I got hit in the head on both sides. I am still taking Tylenol and using ice packs.
I will say that this round of injections felt particularly brutal. I had tears running down my face and cried out a few times. I have a pretty high pain tolerance but maybe I was feeling extra sensitive. Anyway, now I’m anxious that it’s not supposed to hurt for this long. I do have messages into my neurologist, but knowing him it will be a while before I hear back🙄

I keep telling myself I should track symptoms better because vestibular migraines are so unpredictable for me, but the second dizziness and brain fog start I stop wanting to log anything. I tried using regular notes apps before and it just became a mess after a few days. Curious what other people here use to keep track of symptoms without making it feel like a full time job.

Hey everyone! 3 weeks ago I suffered a vertigo attack, the room spinning hit me when I got up out of bed and then when I tried to lie down again an hour later. The vertigo lasted about 10-15 seconds each time. Clearly triggered by a positional change

Ever since, I’ve had lingering symptoms where I feel like I’m drunk or on a boat. My balance is slightly off and my eyes feel a little “slow”, where they feel sensitive to quick head movements. At the same time, I have some mild light, sound, and motion sensitivity. Also, some mild brain fog. I’ve noticed my symptoms are intensified by weather (it’s changing rapidly where I live), hunger, dehydration, or anxiety.

I typically get around two or three migraine headaches a year. They last 2-3 hours and are usually controllable with two ibuprofen

I went to see a vestibular specialist who is basically an ENT and Neurologist. He said that I most likely had either a BPPV episode that triggered a vestibular migraine, one long vestibular migraine, or I'm possibly feeling residual dizziness from a BPPV attack, though he was less confident in that diagnosis given my mild light and sound sensitivity.

I've read that migraine prone people are more susceptible to lingering symptoms after a vertigo event. The doctor told me to take a high daily dose of magnesium and see how I feel in a month. I also did bloodwork and my vitamin D levels are "insufficient", so I'm on a high dose now as well.

Has anyone had a similar experience? Does this sound like one long vestibular migraine? Would vestibular physical therapy help in this case? Should I go back to my doctor and ask for a migraine medication?

I am F21, i have chronic vestibular migraines ongoing for 5 years, i am also in the process of being diagnosed with POTS, my symptoms of dizziness, fainting and poor balance has worsened in the past year. I desperately think that i need a wheelchair because i strruggle to walk short and long distances, I use a rollator whenever possible but i still get very nauseous and off balanced because i am still walking, i mentioned my thoughts to my mum and she believes i shouldnt get one as she thinks im going to be too dependant on it and she believes if i dont continue walking and pushing through it that i wont get better

Has anyone experienced episodic severe “sinus” symptoms that seem to come and go rapidly, but without an apparent infection?

For years I’ve had episodes where I suddenly become congested or blocked, often more on one side than the other. When this happens, I don’t just feel stuffed up — I feel genuinely ill.

I get:

facial/sinus pressure
ear fullness/popping
headache
dizziness/off feeling
exhaustion/malaise
mild sore throat/postnasal drip at times

The strange part is how quickly it can change. I can go from breathing relatively normally to feeling severely blocked within a short period of time, and then sometimes it improves just as quickly, just to return again.

I can go weeks and sometimes months without an ‘episode’, but often it affects me daily, weekly, etc.

A few things that seem relevant:

Steam/hot showers help significantly
Pulling my cheek outward improves airflow noticeably
Nasal strips help somewhat
I already had a septoplasty and turbinate reduction years ago
CPAP has gotten difficult for me because I can’t breathe well thru my nose (I think that’s why)
Symptoms seem worse in perimenopause
I also have migraines/suspected migraine involvement

I’m starting to wonder whether this is more related to nasal valve collapse, autonomic dysfunction, migraine, vasomotor/nonallergic rhinitis, hormone changes, or some combination of all of them.

Has anyone experienced something similar? If so:
What diagnosis did you ultimately receive?
Did anything actually help?
Did hormone changes/perimenopause worsen it for you?
Did treating migraines or sleep issues improve the nasal symptoms?

On January 27th, 2026, I was sitting on my couch late at night playing a video game, when all of a sudden I got extremely lightheaded, like I was going to pass out. I immediately stood up, grabbed onto the wall, and started pacing until it went away. It lasted maybe 10 minutes. The same thing happened the next night, which is when I began to get concerned. Both of those occurred late at night, but on the third day it happened when I was in a therapy session. On day five, I was working when it happened, and had to go home early. I had to pull over several times on the drive because I was so out of it.

I ended up going to Urgent Care and the ER a couple days after that, both of which didn't discover or resolve anything. I was given a short prescription of Toradol and Meclizine, but the Toradol did nothing and the Meclizine made things a lot worse, so I quit taking it immediately.

My symptoms started out with the short bouts of lightheadedness, then escalated into entire facial numbness, and near-total derealization.

I saw my primary doctor who also didn't know what was wrong. She offered to refer me to a neurologist, an offer which I just took her up on yesterday because I'm getting desperate. I've been going to physical therapy every other week for about two months now, and I've noticed an improvement on the facial numbness, but the overall "floaty" feelings and eye strain won't stop.

My PT said that he's been treating it as cervicogenic dizziness, and that he's done just about everything he can do at this point, and recommended that I see a neurologist for the remaining symptoms.

I'm able to drive and work but only if I use every fiber of my being to focus on the task at hand. If I even feel the tiniest bit lightheaded, it's all over for me and it take hours to return to normal.

I've been doing research on my symptoms while waiting for the neurology referral to go through, which is what led me here. And it's scary because it seems like most people, even if they do get mostly cured, never fully recover and the progress they do make take months or years. I don't know how I can live like this for the rest of my life. I don't deserve this, none of us do. Why can our bodies be so cruel to us for no reason? I want to be able to function again.

Hi all,

I am currently on my medication adventure to find something that works for me and my vestibular migraines. Ive so far tried Topiramate and nortriptyline and failed them due to bad side effects.

Topitamate: cognitive issues and developed eye pressure and vision changes.

Nortriptyline: rapid heart rate and dizziness

Im now being put on Nurtec to see how it works and I am TERRIFIED of what side effects I might feel on this now.

Anyone currently taking Nurtec or have experience? Would love some feedback before starting it.

Thank you all again

I’m so happy to have found this sub. I appreciate everyone who takes the time to answer. I’m recently diagnosed and learning everything I can.
How did you come up with your rescue meds? I’ve currently got OTC painkillers and meclizine and want to talk to my doc about a rescue tool kit.

Ciao a tutti,

un po per sfogo, un po per cercare consigli, racconto qua la mia brutta storia degli ultimi 3 anni.

Ho 49 anni e tutto è iniziato nell'inverno 2023, dopo un intervento chirurgico all'intestino. Nei mesi successivi ho sviluppato una sensazione di sbandamento lieve e di stanchezza cronica, associata a una tensione che percepisco ai lati della testa e nella zona cervicale, oltre che ad una forte ipersensibilità ai rumori.

RM encefalo negativa (ne ho fatte due), visita otorino negativa, e adesso sono seguito da centro emicranie. Purtroppo i sintomi si stanno aggravando e non trovo sollievo con nulla. Purtroppo anche le notti sono diventate difficili, e talvolta sento un senso di confusione mentale durante la fase di addormentamento.

Chiaramente tutto ciò ha provocato un incremento dell'ansia e la comparsa di depressione, a causa della sensazione di aver imboccato una strada senza uscita che sta distruggendo lentamente al mia vita.

Ultimamamente il senso si sbandamento è lievemente aumentato, e si presenta tutti i giorni in modo costante. Comincia a comparire anche un lieve senso di vertigigini che sto cercando di non assecondare, ma le giornate sono tutte dure.

La terapia attuale consiste nel propranololo e mirtazapina, ma non mi sembra che stiano portando buoni risultati se non quello di farmi scomparire il mal di testa frequente di cui ho sofferto per molti anni, ma che rispetto ai sintomi attuali provocava molti meno disagi.

Sono veramente abbattuto e preoccupato, perchè vivere così è una dura condanna, e ho la sensazione che non ci siano terapie valide, se non tentativi maldestri e senza bussola di dare farmaci sperando che funzionino. Dopo un primo periodo di timore che si trattasse di un problema neurologico degenerativo, adesso la paura è di non uscirne più e di peggiorare prograssivamente

Leggendo i vari post mi ritrovo in molti sintomi descritti come PPPD, ma sinceramente mi sembra che non ci siano terapie affidabili e funzionanti, e non so nemmeno se è possibile uscirne.

Se avete suggerimenti o consigli vi prego di farvi avanti.

grazie

Hey all,

I got VM/POTS after covid. Has anyone tried flordricortisone or cromlin/ketotifin for their symptoms? I react to every med I’ve been prescribed and I have severe GI issues. I’m always on a boat feeling and on the verge of passing out. I have blacked out before. They told me to wear compression socks and drink more salt but I feel like there has to be more to it. Anyone else? I

I realise they are different for everyone but just wondering if there are any common ones that trigger most people. I hear caffeine a lot but that’s also supposed to be good for migraines 🤨.. can’t win. Processed food ( which I guess is obvious). Environmentally I personally suffer with cigar smoke or Bbq smoke and strong perfumes. I haven’t looked at cutting out any food yet so just wondering where to start really.
I’m 2 years in - loosing the will to live with it all tbh- work is becoming increasing hard and I’m looking to try cutting out some food triggers.
Ps I also suffer cluster headaches 😮‍💨 anyone else have this delightful combo? 🥺

hi all. i’m 24 and had vertigo/nausea/dizziness a long time ago. it went away for years and then came back a few months ago. i started taking b12 to see if it’d help (somewhat) and my GP kept saying to wait for ENT appt, then it got so bad i couldn’t work and landed in the ER twice. during my second visit they realized i had an ear infection and gave me drops, symptoms went away 90%. i also had a ct and mri of my head which were both normal.

after feeling ok for about a month after the infection treatment, i finally got my ent appt last week- he said it’s probably vestibular migraines and to take supplements like 3graine, and since then ive felt horrendous. i dont know why, since they didn’t do anything intrusive. im not sure if maybe talking abt my symptoms for that long retriggered it? i’ve been taking zofran and gravol which helps for a few hours but then it’s back to the same feeling. im so exhausted of feeling like this. i just graduated from university and i can’t even enjoy my life. can anyone give some help or advice ? please

Had my first vertigo event feb 28th, been dealing with this stuff (dizziness not every day, neck pain, headaches, eyes pressure, fatigue, brain fog, floaters that look like small balls if static, blind spots sometimes ) ever since! I’ve been to the ER in march for being dizzy, blood pressure readings were high so the following week my doc put me on high blood pressure. Completely ignored me telling her “I don’t feel like myself, I’m dizzy and feel out of it” she said it’s because you have high blood pressure, take your medication and you’ll feel better. Fast forward to now, had 2 CT scans (neck pain), echo, ekg, hearing test. All those came back normal. I’ve seen a neurologist, ENT & an audiologist. The neurologist told me “this is an ent problem” she just looked at my optical nerves and the March CT scans. I saw the audiologist and ENT doctor yesterday and they both said your hearing test came back excellent but the ENT doctor told me “this isn’t an inner ear problem, it’s a neurological problem. From what you’re telling me it sounds very much like vestibular migraines, but I can’t diagnose you with that only a neurologist can.” This has started affecting my job, missed most of march, part of April and I finally took May off to see if I can get some answers. So do I have VM?

Hey so I’ve never taken a rescue med before and I was prescribed nurtec. Have a couple questions… I don’t always get a headache or aura with my migraine. I sometimes get on and off wobbliness that feels really bad today after two days of heavy screen use at work. Do I take it for that? How do you know when to take it especially when there’s no headache?

and how does it make u feel after u take it? I read nausea may happen… does that go away soon after or is It bad like I need to take a zofran with it

So, a couple days ago, this was posted in this sub: https://www.reddit.com/r/VestibularMigraines/s/J7GoE0KfML

And, it reminded me that I had prisms put in my glasses back in 2021 for double vision episodes that I had been experiencing. In January 2025, I moved and had to get a new optometrist who told me I didn’t need the prism anymore and took it out of my glasses. This is also around the time my vestibular problems started and my double vision episodes slowly began to return. I told the optometrist this January (2026) that I was having double vision episodes again and he said that it was “just my eyes getting tired” and that I still didn’t need a prism.

Well, I noticed this year that my double vision was getting worse and worse, the episodes were more frequent and lasted longer. It was at the point where I woke up with double vision and it would last the majority of the day and only start to wind down late into the evening.

So, because of the post made by u/Adventurous-Pen-5625 I went into a different optometrist today and she noticed that I definitely needed a prism still. So, she had me put on a trial pair of prism glasses and my vestibular issues slowly started to fade away the longer I wore the trial glasses. I am hoping this fixes most of my vestibular issues, even if it doesn’t fix all of it.

What is crazy is that I went through two rounds of VNG testing, an MRI, and an EEG. I also have another EEG soon to try and figure out what is wrong and it might have just been my glasses this whole time!

So, if you think it *could* be your vision, go get it checked out for sure!